I like this idea..but a bit concerned as most people don't know anything about my condition. I might look you up anyway if that ok......
I changed it to a group. If you're still interested, it's here:
http:// www.facebook .com /family /search .php ?q= Elizabeth+Darcy#!/group .php ?gid = 142286192461288
Again, I've chopped it up. I'm hoping it won't get deleted by the program that messes up rival websites.
I've made it members-only, though - just to make sure it doesn't get flooded with people who don't have actual physical pain, stiffness, etc., and the problems that come with them. I sympathize with those who have BFS anxiety, but this isn't the group for them.
I have also linked back to MedHelp on the group page.
Could you please explain the way to check it on fb? I was diagnosed in February of this year with pnhs (peripheral nerve hyperexcitability syndrome) at Mayo Clinic in Rochester. I am currently on medication for symptoms and have an appointment with a neurologist here in Oklahoma in November who specializes in movement disorders. When I made my appt. it took over 3 months to get me in. I am patiently waiting as the pain in my face has not responded to my current medication. Would really like to connect with someone who is going through this. Thanks.